“There are days when I wake up and I feel like I can’t do this one more single day,” says Dorothy.
“Then I look at Melvin and I force myself to get up because he needs to eat. He needs medicine and he needs bathing.”
Dorothy Cook, 65, and Melvin, 76, have been together for 48 years. Dorothy looks after her husband by herself – after two years struggling to find a care package to support Melvin’s complex needs.
On the shortage of carers, Dorothy says: “I think it’s off the scale, I think it’s enormous. I think it’s never gone back to pre-COVID.”
In fact, those in the industry point out it’s never been this difficult to recruit and retain carers.
With an estimated 165,000 vacancies in the adult care sector in England, this week’s budget made clear that the government’s focus remains on the NHS.
So, in the meantime, Dorothy and an untold number of others soldier on.
Dorothy proudly tells me her husband is a former electrical engineer who helped design the nose prototype on Concorde.
She points to the built-in bay window seat I’m sitting on as we talk – it was carefully crafted by Melvin who liked carpentry and painting.
But the brain condition ataxia has robbed Melvin of the body he knew. His walking, balance, muscles, swallowing and speech are all affected.
Melvin is sitting up in bed and Dorothy is using prompt cards to help him communicate.
At first, it’s difficult to make out what he’s saying. But with patience and encouragement from Dorothy, Melvin slowly explains: “My legs don’t do what my mind tells them.”
But the weight of responsibility Melvin’s needs are putting on his wife is not lost on him.
He speaks again – and after a second time it becomes clear he is saying to Dorothy: “One day at a time.”
The words bring Dorothy to tears.
Wiping her eyes, she replies: “I wasn’t expecting that. You know, part of being a carer, it’s not just the physical challenge and the practical side. What people don’t realise, it’s the emotional side.”
Dorothy explains how difficult it’s been to find carers to support Melvin’s complex needs.
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She says: “There was a rotation of different ones coming in. I would end up just showing them what to do because I couldn’t leave somebody and just say ‘he’s all yours’ so it’s broken down.
“There aren’t the resources and the care agencies are really struggling.”
Dorothy makes Melvin’s meals; prepares and gives him his medication; supports him as he walks slowly with a frame and washes him and assists him in the bathroom.
She says: “Looking from the outside people think ‘oh they’re managing. They’re doing very well. Dorothy’s doing that with Melvin. She makes it look easy’. But I’m really crying inside going ‘somebody help me’.
“Caring for someone 24/7 has taken a huge toll on my own mental and physical health over the last two years when I’ve been without a care package.
“I’m housebound by default because I don’t have any carers in. I can’t leave him.”
Wendy Brown, 73, understands only too well the emotional toll caring for a loved one can take.
Wendy and her family tried to look after her 97-year-old father-in-law Arthur as best they could. But eventually, they couldn’t cope.
“If there was something I didn’t do and he died, how could I live with myself,” she says through tears.
Wendy says she battled to get carers for a long time. But she believes months without help led to repeated medical emergencies for Arthur and three stays in hospital.
She says Arthur was sent home from hospital with a catheter that neither he nor she knew how to empty.
“It’s the pulling out of the catheter and the infections and the damage he’s done which has made him as bad as he is.”
Wendy recalls a conversation she says she had with hospital staff during one of Arthur’s periods in hospital.
“They said ‘he’s not really been conscious and not been able to talk to anybody’ and I went in one day and the doctor said they were getting him ready for discharge.
“I said what do you mean discharge? Where are you going to discharge him to? You can’t send him home. How do you think he’s going to cope?
“I was so angry, my daughter had to come and pick me up because I couldn’t drive the car. It’s like hitting your head against a brick wall. It didn’t matter what you said, they weren’t listening.”
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Latest figures from Skills For Care, an organisation which monitors and estimates the vacancies in adult social care, suggest 10.9% of social care jobs in England are unfilled.
That totals 165,000 empty posts across the sector, including jobs as carers.
Over the last year, vacancy rates have been the highest since records began a decade ago.
The lowest recruitment levels are in domiciliary care – which means carers who work in people’s homes. There are more than 76,000 unfilled domiciliary care posts.
In 2019 former prime minister Boris Johnson said: “We will fix the crisis in social care once and for all.”
But campaigners say it hasn’t been enough.
Professor Martin Green is the chief executive of Care England, a charity which represents independent providers of adult social care.
He said: “I have to say I’m sick of hearing about the NHS and I’m sick of hearing about politicians who seem to think it sits in a silo unconnected to every other bit of the system, not least of which how you support people well in communities so they don’t go into crisis and don’t need the NHS.
“The care sector has been telling successive governments how to solve the problem and talking about needing a long-term approach to funding and the workforce.”
The government insists it “backs” social care in spite of criticism that there was no mention of the sector in this week’s budget.
Last autumn the government pledged what it called a “record-breaking” £7.5bn pounds of funding for social care over the next two years.